Patient Power: Many Miles Traveled, Many More to Go

I am writing this in flight across Canada. West to East. At Niagara Falls I will join a gathering of patients. I have met few of them but know many. That’s the beauty of the connections we’ve made since the mid ‘90’s when I was diagnosed with chronic lymphocytic leukemia. The bits and bites of the Internet have served us. In milliseconds we’ve found friends…guides to help us, calm us, and just by connecting know there is hope. I am so thankful my diagnosis came at a time when this support had started.

I am writing this in flight across Canada. West to East. At Niagara Falls I will join a gathering of patients. I have met few of them but know many. That’s the beauty of the connections we’ve made since the mid ‘90’s when I was diagnosed with chronic lymphocytic leukemia. The bits and bites of the Internet have served us. In milliseconds we’ve found friends…guides to help us, calm us, and just by connecting know there is hope. I am so thankful my diagnosis came at a time when this support had started. I am also thankful that, over time, there has been so much to talk about: subtypes of disease, genetics, personalized medicine, targeted therapies, longer life, cure.

As we patients have connected in a myriad of powerful ways the clinical community has responded. Some have embraced our passion for knowledge and control. For many it has been a slow process. They wear white coats and have many letters after their names, we do not. But technology is not just about science, it’s also about communication. That has been our best friend. Today we have conferences, email groups, web sites, Facebook pages and Twitter feeds. We videotape our doctor visits and share Instagram photos. It has made some patients well known and some doctors and researchers celebrities.

There is another part of the patient empowerment movement that is yet to come: having the medical community – not just the doctors, but their administrative surrogates, including the professionals who run their societies, their hospitals and their clinics, understand that we patients must be in control, not them. Not only is it our health on the line and our decisions to make, but we are their customers.

About a week ago it sunk in for me that we have miles to go on this. A major medical association, for example, has issued public declarations of their support for getting more information directly into the hands and minds of patients, and has proudly developed a consumer website as an example of this commitment. The same organization, however, has rigid rules in place regarding who can attend their medical conferences, how the information shared there can be distributed and no efforts have been made to make it easy or affordable for patient organizations to participate.

In the new age we are in, we have different expectations. The medical world is less about doctors talking to doctors or doctors talking to the general public. It is now about doctors and patients speaking together and at the same level and yes, patients talking to patients. It is something to support and celebrate. And it is not about owning one “authoritative” channel above all others. It is about a rainbow of discussions. The medical and health organizations that “get” that will eventually “win” and those that do not will fall behind.

In a future blog I will be more specific about organizations that truly celebrate powerful patients and those that try to hold us back. And I welcome your suggestions. I really do see “patient power” as a growing movement, putting us on top and the research and clinical world at our service, and I am excited about that understanding taking hold.

If you’ve read this far I hope you have been nodding your head and we are in sync. If you are alarmed about a change in what has been a paternalistic medical world, too bad. Because change is a comin’!

I welcome your comments and wish you and your family the best of health!